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Carers UK Forum • lewy body disease
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lewy body disease

Posted: Tue Aug 28, 2007 9:52 pm
by Eva Rebecca
Apparently night time sleep disturbance is a common gradually worsening ocurrence for folk suffering with Lewy Body Dementia. Dad has it and it seems to be getting worse. Does anyone have any tips or ideas for getting him back into bed when he is so worried the bullocks are out of the field. Mum has lorazepam o.5mgs to give him but we have not tried any sleeping pills and are worried that he may react badly.The other night i got two hours sleep and the rest of the night he was in and outof bed like a yo yo just fiddling even though he was so tired . Mum cant carry on for long like this . She will be ill. Nursing care homes dont provide enough night staff to handle night time wandering in my experience and if they do you can never be sure can you. Have asked for two nights a week twilight care 12 - 6am. Social services assessed and say they dont provide it in our area. Surely its cheaper for them to give two nights of care than to place dad in a home which they said was the only alternative. Alzheimers society said that we qualify which we know already. Any of you seasoned folk got any ideas. We dont have any shares or gold bullion stashed away so what do we do. We wanrt himat home as long as possible. Off to hosp next week to see consultant.
Sorry no talking lately on the forum bin a bit tired. Image

Eva Rebecca, welcome to the

Posted: Tue Aug 28, 2007 10:29 pm
by charles47
Eva Rebecca, welcome to the forum.

You say that Social Services assessed for the twilight service but don't provide it in your area.

If the assessment found that it was needed, they have to provide the service - you can ask for Direct Payments.

If the assessment found that it wasn't, it is likely that it was on the grounds that a service doesn't exist. This would be an unlawful assessment as it is resource-led rather than needs-led. This is a provision of the NHS and Community Care Act 1990.

I would ask them for the basis of their decision not to provide the service you requested and ask about Direct Payments.

Hello Eva Sounds like you and

Posted: Tue Aug 28, 2007 10:41 pm
by Maryann
Hello Eva

Sounds like you and your Mum could do with a few good nights sleep as you can't go on like this. Charles is right that if you have been assessed of needing night care then it should be provided. Even know they don't provide night care in your area doesn't mean that you can't have Direct Payments, as you buy in your own night care with the money that they supply you with.

My Mum takes Lorazapam 1mg, it does calm her down, though the doctor wants me to ween her off it, which is quite difficult!

Hope that your able to get some help soon, please keep us posted.

Take care
Maryann x

sleep disturbance in Lewy Body dementia

Posted: Tue Aug 28, 2007 11:23 pm
by Eva Rebecca
Thanks guys. Thats so helpful. Just knowing the terminology will help when i speak to the assessor next week. I used to know all the gen when i worked in mental health full tme but its so long ago now. Thanks so much. I will assume they assessed as not neccessary then but that aint right!
So long will let you know how we get on.

twilight care

Posted: Tue Aug 28, 2007 11:25 pm
by Eva Rebecca
Charles, just a quick word. Mum has full attendance allowance would this count as her direct payment. Or can you get extra?

Attendance Allowance is not a

Posted: Wed Aug 29, 2007 5:45 am
by charles47
Attendance Allowance is not a direct payment in the sense that although it can be used to pay towards care, and is a part of the disposable income counted in for this purpose when charges for social care are worked, it cannot pay the whole amount.

For examole, most care agencies in our area charge £12 an hour or over. Full Attendance Allowance would pay for only about 5 hours a week. But if your mum needs more support it has to be paid for, so social services departments around the UK have to offer additional funding, "Direct Payments", which is funding paid into a special account and which can only be used to provide the necessary care agreed with social services. The timing of that care and who provides it is down to the carer or the cared for, depending on the circumstances. Effectively you would be funded to employ your own support worker(s). Help is available, but you have to account for the money and you become an employer with all the legal resposibilities that entails. Or you can arrange for direct payments that will allow you to use an agency, at least in some cases. Schemes tend to vary a little from area to area.

direct payments

Posted: Wed Aug 29, 2007 10:50 pm
by Eva Rebecca
Many thanks Charles. This is very helpful.


Posted: Thu Aug 30, 2007 5:42 pm
by Eva Rebecca
Hi Charles and Maryann.
Sister has chatted to social worker who says he has applied for direct payments for night care but that mum will not get them as approval for night time care is not available in our area!Discussed resource led nature of assessment and he cites a clause that states that resources have to be available and they are not available so there is nothing we can do except contest the decision.What do we do just carry on until mum gives into them saying all they can do is put him into care. Told them we would contest it. Will do tonight as mum says she felt loads better after the last time i looked after him. She slept from 10 -6am. and felt normal in the morning. SW says that payments are for personal care only not making sure someone gets to the toilet in stead of going on the floor /corner or on bed. Also not for helping him back to bed in his confused state when he would wreck the room if left alone.........how more narrowed down can this get. Has mum underplayed her caring role again and not painted the true picture . I wasnt there when he came to see her.Also they have dad down as having alzheimers not Lewy Body Disease which consultant is querying. I guess that wont make any difference .
Plodding on then AND WAIT FOR THE BIG DECISION Image

The clause about resources refers

Posted: Thu Aug 30, 2007 9:04 pm
by charles47
The clause about resources refers to money. If they have identified a need and an individual is in danger if the service is not provided, they have to provide regardless. This is a fact of law and comes under both the NHS and Community Care Act 1990 and the Disabled Persons (Services, Consultation and Representation) Act 1986. To have a blanket policy on no direct payments for night care is a resource-led decision that has no regard for needs. Needs must be considered first and then the resources. Any other decision would almost certainly be unlawful.

The danger comes when you refuse to continue caring at night. Your mum can't do it. They have to consider keeping him at home first and so should offer direct payments first. The fact that there are no existing services in the area is irrelevant.

Hi, we had the same

Posted: Thu Aug 30, 2007 10:19 pm
by marie66
Hi, we had the same problem when we were setting up the Direct Payment!
We were told by SS 'we don't do regular night care in this area'


We contacted trhe direct payments unit in Edinburgh (I'm in Scotland) and it was all sorted out!

Don't let them fob you off.

I use the DP to pay my daughter to come stay over 2 nights a week so i can sleep and it's been working this way since April with no problems, mind you it took from December to April to set it up.

You'll find my thred on here detailing all the steps it took to set the DP up, it was a long drawn out process but well worth it in the end as we have the care we wanted!

marie x