• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

What are our rights?

kaz

Registered User
May 3, 2004
19
Hi
We need help, my dad was diagnosed with Alzheimer's about a months ago he is 58 , the other week a psychiatrist cam to see him spent about 15 minutes with him and decided she could not say for certain as could be AD or a something else. She later decided could be a pseudodementia and wanted to take him to Runwell hospital for assessment which would take 6 weeks. We were against this idea for many reasons, mainly his weight loss. When she came the other week she said the assessment would take 6-8 weeks. It has been agreed that he need 24 hour care but he cant be placed anywhere until she makes her decision on what he has. She told us he could be placed without her decision as he need the care and he could be seen at a different place as a day assessment.

After our meeting with the social worker at the hospital it seemed that this was not going to be a problem as his doctor opinion was that he had AD and he would be needing 24 hour care no matter what. Then yesterday we were told things could not go ahead as they needed a diagnosis to be able to place him because of the difference in opinion of the doctors. Runwell was again mention and we said we were not happy for him to go there we discussed bring him home but because he need 24hr care this would make us ill.
The social worker stated that he could be placed in Runwell without our permission, i asked if that would mean sectioning him she said no they could do this under the mental capability act but agreed with us that we should have the second opinion that we had asked for some time ago.
Today some doctors came round to discuss his discharge. He stated that he would not stay in hospital anymore due to risk of infections (he has been in there for about 3 months now without any complications) and that he could not come home as he though we could not look after him as he needs 24hr supervision and he cant be place in a home without this assessment so he was transfering him to Runwell as this was in his best interests. He said it did not matter that it was against out wishes he could do this!

We asked about the fact we have not got our second opinion and with this would mean he would not have to go to runwell - his reply you will get that in runwell.
It is clear they want him out of their ward.

Runwell is far out and at the moment we can visit everyday but this is going to be difficult with the distance we will have to travel so will be seeing less of us also with his confusion we are concerned about how the move will affect him.

What rights does dad have and where do we stand in all of this

Sorry for going on a bit, but we just dont know where to go from here.

Karen
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,406
Kent
I`m sorry kaz, I don`t know enough about this, but I suggest you phone the Alzheimers Society Helpline tomorrow. They should be able to give you advice about where you stand.

national helpline on 0845 300 0336.
 

elaineo2

Registered User
Jul 6, 2007
945
leigh lancashire
Hi Kaz.is Runwell a dementia unit or a rehab unit?If you are unhappy with a move then you have a right to say so.Have you been given other places to look at?the hospital cannot ship him out without a place to go.i am a bit quizzicle,is dad self funding or S/S .i only ask because the S/S may give you no option(experiences of families i have met).we have the S/workers on the phone all the time asking for availabilty on blocked beds.wether the family have seen the home or not!This is how residents get mispalced.The S/W finds a home with a vacant room and thats it.pleae also be aware that in these cases (can't say the name now as i am saying something that may not be appreciated by the profession,and there may be that the profession is on this site) the resident is often misplaced so its one less case load to have to deal with.but when the misplacement is discovered it is very hard for the home to meet their needs'battle commences with both parties.Is this fair to the redident to be moved from pillar to post for the sake of money?bit of a rant there wasn't it.sorry ,i am so passionate about care.love elainex
 

jenniferpa

Registered User
Jun 27, 2006
39,448
I assume you're talking about the mental capacity act. I'm afraid to say that yes, if they feel it is in your father's best interest they can indeed move him. They do have to take into account your wishes but need not be bound by them. The primary issue is HIS best interests. It is disappointing to say the least that you haven't got a firm diagnosis after all this time, and clearly they've dropped the ball on this. However, I don't think you will be successful in keeping him in his current hospital. No, he may not have caught anything yet, but on the whole, a hospital IS a good place to acquire such an infection. Also, if they really can't properly evaluate him there (and I shouldn't be surprised) then the assessment unit seems on the face of it to be the best placement for him. I quite understand why you don't want this to happen, but unless you can prove (or at least put a convincing case) that such a move would be detrimental to him, I doubt it will ultimately make a difference.

How able is he to express his wishes? Because if he can indicate that he doesn't want to move and can express the fear that such a move might mean he doesn't see so much of his family (possibly a tall order) that might be a possible out. Not necessarily though, because a case could be made that he isn't competent to make that decision. However, if he can't express any opinion, the fact that it might be inconvenient for the rest of you will, I'm afraid , not make much difference when it comes down to it. Not if by moving him they can pave the way for him ultimately to go an appropriate living situation. And that will be the overriding viewpoint and goal I suspect.

I think the problem you are encountering is due to his age as much as anything - if he were 88 they'd say, sure it's AD, but 58 is very young, and I can see why they would want to rule out other, possibly treatable dementias. In your position I would be inclined to try an find out if they suspect such a dementia, becasue if not, the question is moot - he has an uncurable dementia and the label is unimportant. Now I wouldn't have said it was in his best interests in that case to be sent to an assessment unit for 6 or more weeks if it's not going to make a differnce to his ultimate placement. I think also, when you're talking to them, you should harp on about "his best interests" because that's the relevent phrase of the Act.