Expert Q&A "Safety for carers and people with dementia" Tues 17th 3:30-4:30pm

[Mark_W]

Many people with dementia want to live at home for as long as possible. Often, this is with support from others. However, it can be difficult managing everyday situations if you have dementia, particularly as the dementia progresses and you get older. As a result, some people may not be as safe at home as they used to be. Also carers can sometimes find themselves facing safety issues as well.

Our next Q&A will be on the topic of "Safety for carers and people with dementia" – covering topics like physical safety, making homes safer and finding the right balance between independence and unnecessary harm.

Sally from our National Dementia Helpline will be answering questions on Tuesday 17th January from 3-5pm.

If you have any questions you'd like to ask, you can post there here, or if you prefer, you can email your question to us at talkingpoint@alzheimers.org.uk and we'd be happy to ask them on your behalf.

Thanks

 

[MaureenNewark]

Question about safety

My Mum (92, deaf) insists on living independently but I'm increasingly fearful for her safety. We've managed so far e.g. leaving notes, using calendar, labels etc, getting appropriate flashing smoke alarm, getting help e.g. window cleaner and gardener. But she obsessively cleans the house and even stands on things to clean - (even the outside windows every week, despite having a window cleaner) and can't bear it if any changes are made. I tried to remove the steps so she can't stand on them but she practically fought me off.
I live 20 miles away fro her and am a double carer (my husband had a stroke and is deteriorating) and I'm responsible for everything for my Mum but can only be there 2 days a week. A cousin who lives nearer and her neighbours - also fearful for her safety - are v. kind and help when they can. But she's still lonely, angry and won't even talk about finding sheltered/supported accommodation. Do I pull rank and insist? Is that ethical? After 2 years of this double-caring I'm worn out, can't face moving her in with us and can't figure out how best to keep her safe in her home; but I'm terrified of the anger if I attempt to outflank her and insist on her moving. Do I try to accept the risks of her staying independent - though it worries me all the time - or try to insist on her changing her living accommmodation?
Sorry if inappropriate for this Q&A- am new to the forum!

 

[nitram]

"Do I try to accept the risks of her staying independent - though it worries me all the time - or try to insist on her changing her living accommodation?"

You've hit one particular problematic nail on the head.

A PWD (person with dementia) is the reverse of a child growing up when it comes to recognising risks and danger.

You decide that a child understands the danger of crossing a road, and precautions to be taken, and allow them to cross unaccompanied, they are delighted and look forward to 'more things that they can do'. As they grow older they become more independent.

With a PWD it is different, as the disease progresses they become less able to make rational judgements and react violently to any suggestion that they should do things differently. In effect they grow younger not older.

As far as insisting that she changes her living accommodation, and if Social Services become involved, you immediately run into the problem of whether or not she has capacity to decide where she lives.

Sometimes it takes a crisis for anything to be done.

Does anybody have LPA , either Finance and Property or Health and Welfare?
https://www.gov.uk/power-of-attorney/overview

 

[Mark_W]

Just bumping this thread to say that we'll be starting the Q&A in about an hour so if you've got any questions now is a good time to post them here.

 

[Mark_W]

Hello and welcome to today's expert Q&A, we'll be getting started in a few minutes answering you questions here and from email. In the meantime I'll hope you'll join me in welcoming our guest expert Sally from the helpline.

 

[anapurna]

Hallo everyone

Just to say I am one of the helpline advisers and I am very happy to reply to any questions you have around safety - which is a very common query we have on the helpline!

 

[anapurna]

My Mum (92, deaf) insists on living independently but I'm increasingly fearful for her safety. We've managed so far e.g. leaving notes, using calendar, labels etc, getting appropriate flashing smoke alarm, getting help e.g. window cleaner and gardener. But she obsessively cleans the house and even stands on things to clean - (even the outside windows every week, despite having a window cleaner) and can't bear it if any changes are made. I tried to remove the steps so she can't stand on them but she practically fought me off.
I live 20 miles away fro her and am a double carer (my husband had a stroke and is deteriorating) and I'm responsible for everything for my Mum but can only be there 2 days a week. A cousin who lives nearer and her neighbours - also fearful for her safety - are v. kind and help when they can. But she's still lonely, angry and won't even talk about finding sheltered/supported accommodation. Do I pull rank and insist? Is that ethical? After 2 years of this double-caring I'm worn out, can't face moving her in with us and can't figure out how best to keep her safe in her home; but I'm terrified of the anger if I attempt to outflank her and insist on her moving. Do I try to accept the risks of her staying independent - though it worries me all the time - or try to insist on her changing her living accommmodation?
Sorry if inappropriate for this Q&A- am new to the forum!

Hi there This does sound very worrying for you - almost like waiting for a fall and the consequences of hospital care. This is not so much about pulling rank as knowing that however she feels about it - you are acting in her best interests. If you do things to limit her climbing on steps, you won't be in her good books, but sometimes you may need to bite the bullet and take some sensible precautions to avoid the very real risk of a fall. Your Mum may well get angry and have no means to appreciate why you are doing this, but it may extend her independence at home.

 

[Mark_W]

And we have this question that's come in via email from Elizabeth:

"Do you have YouTube videos for personal care of frail late stage dementia sufferers? I need to know bathing, toileting, hoisting, and how to transfer them from bed to chair -using a turner.
I have been watching such videos piecemeal, and we have been seeing these done the last month in hospital. Is there a kind of clearing-house of the best?
My 95 year old father is coming home from hospital in 2 days, and my mother has turned the living room into a ward. She is a saver, having amassed more than the NHS allowance for care, and will not spend 180£ a day on 8 carers. So I (aged 61) will pitch in with all my might."

 

[anapurna]

And we have this question that's come in via email from Elizabeth:

"Do you have YouTube videos for personal care of frail late stage dementia sufferers? I need to know bathing, toileting, hoisting, and how to transfer them from bed to chair -using a turner.
I have been watching such videos piecemeal, and we have been seeing these done the last month in hospital. Is there a kind of clearing-house of the best?
My 95 year old father is coming home from hospital in 2 days, and my mother has turned the living room into a ward. She is a saver, having amassed more than the NHS allowance for care, and will not spend 180£ a day on 8 carers. So I (aged 61) will pitch in with all my might."

Hi there The Society has not produced such videos as we are not experts in hoisting and transferring. For the best advice it may be an idea to contact the British Association of Occupational Therapists who set standards for the profession: 020 7357 6480. Admiral Nurses are dementia trained nurses who can advise on personal care too: 0800 888 6678. We have a useful factsheet on washing and bathing that may be useful: http://bit.ly/1X8QxGy

 

[MaureenNewark]

Thanks Nitram.

Glad to know I'm not alone and that this is a common problem! Social services not involved but I think I'll start with her GP and see if I can have a conversation aout assessing her for dementia...which as you can see is in my opinion very likely, but so far have muddled along for a couple of years without pursuing it. Not sure that any intrusive tests would be acceptable to her, but a GP opinion and perhaps referral to memory clinic would be worth trying.
Good point about LPA. We did the forms years ago but I shan't/can't register it until there's confirmation of incapacity.

You're absolutely right about the reverse-toddler syndrome! Waiting for a crisis (medical or otherwise) is I suppose what I've been doing so far...but I think I need to be more active in involving professional advice/help!

"Do I try to accept the risks of her staying independent - though it worries me all the time - or try to insist on her changing her living accommodation?"

You've hit one particular problematic nail on the head.

A PWD (person with dementia) is the reverse of a child growing up when it comes to recognising risks and danger.

You decide that a child understands the danger of crossing a road, and precautions to be taken, and allow them to cross unaccompanied, they are delighted and look forward to 'more things that they can do'. As they grow older they become more independent.

With a PWD it is different, as the disease progresses they become less able to make rational judgements and react violently to any suggestion that they should do things differently. In effect they grow younger not older.

As far as insisting that she changes her living accommodation, and if Social Services become involved, you immediately run into the problem of whether or not she has capacity to decide where she lives.

Sometimes it takes a crisis for anything to be done.

Does anybody have LPA , either Finance and Property or Health and Welfare?

 

[Cat27]

I was always worried about my personal safety around my dad. He was very volatile & agressive. I was scared of him for quite a while.
Any tips on how to keep carers safe?

 

[MaureenNewark]

Thanks for advice. Waiting for crisis is in effect what I've been doing (and getting anxious/guilty about). I gave up trying to take steps away not just because of the anger, but also because I feared that without them she'd climb on something rather less stable - she HAS to clean her windows every week regardless of having a window cleaner coming! On the subject of dementia - which I think accurately explains her memory loss, increasing confusion, anger and disorientation - I spoke to the Society's helpline and prompted by the very helpful discussion I'll talk to her GP and ask for him to consider assessing her for a dementia diagnosis.

Hi there This does sound very worrying for you - almost like waiting for a fall and the consequences of hospital care. This is not so much about pulling rank as knowing that however she feels about it - you are acting in her best interests. If you do things to limit her climbing on steps, you won't be in her good books, but sometimes you may need to bite the bullet and take some sensible precautions to avoid the very real risk of a fall. Your Mum may well get angry and have no means to appreciate why you are doing this, but it may extend her independence at home.

 

[Mark_W]

Maureen if you've got any questions about Lasting Power of Attorney I'd recommend starting a thread in our Legal and Financial Issues forum: https://forum.alzheimers.org.uk/forumdisplay.php?60-Legal-and-financial-issues.

Best Wishes

 

[nitram]

Bit OT

"Good point about LPA. We did the forms years ago but I shan't/can't register it until there's confirmation of incapacity."

If it is an LPA not EPA made before Oct 2007 you should register them whilst the donor has capacity, this guards against them being rejected at a time when they cannot be corrected.

 

[anapurna]

I was always worried about my personal safety around my dad. He was very volatile & agressive. I was scared of him for quite a while.
Any tips on how to keep carers safe?

Hallo there. Carers must do their best to keep safe and avoid coming to harm and this may mean leaving the room until the moment has passed, or distracting the person in some way. When there are predictable times of aggression, if it's possible the carer should have the help of others to hand. In more extreme instances it may mean calling the ambulance crew for their help. Although other things should be tried first, the GP may advise on mild medication that may help the person feel less anxious.

People can read our factsheet on Dementia and aggressive behaviour here: http://bit.ly/1LQEzWc .

 

[Mark_W]

Well that's all we have time for today.

Thank you to everyone who's asked questions and thank you to Sally for being our Expert for today.

We'll be returning in a few weeks with our next Expert Q&A on Lasting Power of Attorney, keep an eye out for an announcement with the details.

Best Wishes