2011 Census and people with dementia

[rose_of_york]

We will all receive a census form soon. So will people with dementia living alone (such as my mother). I know that mother is likely to throw it away, tear it up, lose it - anything other than hand it to me to complete for her. She is incapable of completing it for herself.

I phoned the Census Office helpline to find out what to do in these cases - the guy basically said "I had the same problem from somebody yesterday and I don't know what to say, I'll take your details and ask somebody else" . In other words they'd not considered the problem when planning the census - even though there are thousands of people with dementia and other problems living alone who will not be able to cope with the form and may not remember to ask anybody to help them with it.

Barbara

 

[ella24]

Hi

I can assure you that they DID think of this (sounds like a helpline training issue) - if needed, you can request an additional form to be sent. This will cancel out the previous form.

If you think mother would respond to someone helping her complete it, a census collector can be sent to see her (via appointment through helpline) and help.

Another way around it, is that if you are able to get hold of the form, you can complete online on her behalf.

 

[Katrine]

Online submission - FAQs 2011 Census

Are you all worried about the threat of a £1K fine for non-completion? There are loads of people employed to follow up non-completion but it would be easier to deal with this pre-emptively, and you can do, by filling the form in ONLINE. If you look at the form, on the front page, top right hand corner, is a personal internet access code and the web address http://www.census.gov.uk Take the form away from the person who you feel can't fill it in themselves and fill the form in on 27 March, or soon thereafter.

http://2011.census.gov.uk/My-census/Frequently-asked-questions#14

The 2011 Census will be the first time that you can complete your census questionnaire online. Your paper questionnaire will include an internet access code to enable you to do this securely. This service will be available from 4 March 2011. You will need your internet access code each time you log into your online questionnaire, so don't dispose of your paper copy until you have finished and submitted your questionnaire online. You may find online completion faster and more convenient. For example, the online questionnaire will automatically skip any questions that don't apply to you and give you hints and tips along the way. You won't have to complete everything in one go. You'll be able to just save the answers you've given so far and come back to it later.

 

[rose_of_york]

Are you all worried about the threat of a £1K fine for non-completion? There are loads of people employed to follow up non-completion but it would be easier to deal with this pre-emptively, and you can do, by filling the form in ONLINE. If you look at the form, on the front page, top right hand corner, is a personal internet access code and the web address http://www.census.gov.uk Take the form away from the person who you feel can't fill it in themselves and fill the form in on 27 March, or soon thereafter.

http://2011.census.gov.uk/My-census/Frequently-asked-questions#14

Not at all worried about the fine - if I could get hold of the form I would fill it in online. Am worried about some stranger going in to "help" mother who would find it confusing and very likely to get agitated and aggressive. She can't remember where she lives or anything that she would be expected to know.

As I said it is very possible that she will hide/lose/throw away the form before I can get it from her to complete.

 

[rose_of_york]

Hi

I can assure you that they DID think of this (sounds like a helpline training issue) - if needed, you can request an additional form to be sent. This will cancel out the previous form.

If you think mother would respond to someone helping her complete it, a census collector can be sent to see her (via appointment through helpline) and help.

Another way around it, is that if you are able to get hold of the form, you can complete online on her behalf.

Well their website doesn't mention this problem, and the person on the helpline I spoke to was unaware of what to tell me, so you must have more insight into their processes than I have. Mother would not respond positively to a collector asking her questions which she would be unable to remember the answers to. I am quite happy to answer it online for her (as much as I can anyway) but that needs me to see the form to get the access code.

 

[ella24]

so you must have more insight into their processes than I have.

Sorry, I had just replied on another thread and forgot i hadnt explained on this one - I'm working on the Census at the moment, which is why I knew that the helpline had missed something.

I can make sure it is raised at the helpline.

 

[rose_of_york]

Sorry, I had just replied on another thread and forgot i hadnt explained on this one - I'm working on the Census at the moment, which is why I knew that the helpline had missed something.

I can make sure it is raised at the helpline.

If you could that would be really useful - thanks. There must be thousands of people in that situation, unable to complete the form or understand the questions or why it's happening

 

[Confuse]

I went to pick my mum up this morning only to find her shredding her census form ( she is obsessed by shredding)
I have applied for POA and we signed the form at the lawyers this afternoon but will have to wait up to 3 months for the Public Guardians office to send out my certificate.
Where do I go from here. I phoned the census line but got no help at all

 

[JPG1]

This is one for the Alz Soc to post on the forum and to explain to TPers about the Census and Dementia.

Otherwise a lot of people are guaranteed to be worrying without any reason to worry.

There's another thread also dealing with the 2011 Census - so it may need a definitive response from the Alzheimer's Society, in the form of Katherine W.

We poor humble TP members can only do so much ... to alleviate stress and strain, but if comfort and total reassurance comes form the Horse of Dementia, then it may be accepted. The Horse being the Alzheimer's Society.

Nobody can expect the Census Helpline to answer all the questions about every single disability that comes their way. But the Alzheimer's Society can answer questions about Dementia and about people currently living at home with Dementia, or in Care Homes with Dementia.

The Census is a count of the population. Nothing more; nothing less. Yes, this particular Census has slightly intrusive questions that other Census forms may not have required to be answered, but the basic purpose of the Census is the same. And with or without Dementia, the problems faced by anyone who may be AWOL from normal place of residence are the same.

Help, Katherine W!!!

 

[Katrine]

Email your MP

I have just sent an email to my MP and suggest that others might do the same. If we are stuck with muppet civil servants [no offence meant to the workers, just to the senior managers!] dealing with this issue our relatives may be harassed for non-return. Why not get the issues raised in Parliament? Here is what I wrote to my MP:

Dear [name of MP], I am one of your constituents and a member of the Talking Point Forum of the Alzheimer's Society, which is for anyone affected by dementia. I myself have a close family member with dementia.

There is a lot of concern at the moment about people with dementia who live alone and are unable to complete their Census forms. http://forum.alzheimers.org.uk/showthread.php?t=32084
These people may refuse to have an enumerator come to their house to fill in the form, which seems to be the only option offered on the Census website. Although it is possible for someone else to complete the form on their behalf, and this can be done online, it depends on the other person having access to the original paper form sent to the householder (there is a reference number on the form to assist online completion).

How do family members/carers assist the householder when that person has shredded or lost the form, or refuses to return it? The Census helpline does not seem to have an answer to this and many of us are very worried abut the situation, which we feel should have been anticipated and provided for. Carers are often stuck in the confidentiality loop, and here we are again. There is a legal requirement to fill out these forms but for someone who does not have mental capacity this is not going to happen. Can you advise me please?

 

[TinaT]

Quote:
There is a legal requirement to fill out these forms but for someone who does not have mental capacity this is not going to happen.

This is another problem. What a doctor or psychiatrist might construe as 'having mental capacity' the person who does the day to day caring knows that 'mental capacity' can change from day to day or even certain moments of certain days.

What would be the situation of a person with dementia whom the professionals have deemed still 'of mental capacity' but doesn't fill in the form on time. Would they then be fined?

xxTinaT

 

[cragmaid]

What would be the situation of a person with dementia whom the professionals have deemed still 'of mental capacity' but doesn't fill in the form on time. Would they then be fined?

Much as I would like to see this tested in court, I really do think that there would be no action taken if it can be shown that there was a medical reason ( and AZ is a medical cause) why there could not be compliance.Maureen.

 

[CarrieH]

Interesting to see this topic as my census form arrived this morning and I was wondering how my parents would get on with their form. My dad could never fill it in and my mum was right handed prior to her stroke leaving her paralysed on that side. I know she will want to fill it in, but to do all that writing will take an awfully long time for her. I thought there might be some guidance notes for people who have difficulty filling the form in. If I can fill it in online for them I might ask her if she wants me to do that.

 

[thimblegirl48]

I share rose of yorks concerns. My Mum wouldn't let me take her form away with me so I have left it with her. However it is likely to be hidden or shredded by the time I next visit! She has no memory of her last employment. She quoted the job she had working in a munitians factory back in the early 40's when I asked her. I am also concerned that if I fill in the form on her behalf and inadvertantly give incorrect information does that leave me open to prosecution? She is so paranoid that she would see a census official as someone who wanted to put her in a home and refuse to answer any questions. I don't think they have thought this one through.

 

[jenniferpa]

Your best bet to get the society to address this is to contact them directly.

http://www.alzheimers.org.uk/site/scripts/contact.php

The forums are not for communicating with the society directly, and in truth, this issue is something that is not specific to this forum - I'm sure there will be people contacting the help-line over this issue. In fact, that would probably be the fastest way to highlight this potential problem area - call the helpline.

 

[Tender Face]

Your best bet to get the society to address this is to contact them directly.

http://www.alzheimers.org.uk/site/scripts/contact.php

The forums are not for communicating with the society directly, and in truth, this issue is something that is not specific to this forum - I'm sure there will be people contacting the help-line over this issue. In fact, that would probably be the fastest way to highlight this potential problem area - call the helpline.

I agree, it’s not specific to dementia alone but very relevant surely?

This is an issue that many people with dementia and their carers need advice and support on. And some ‘generic’ guidelines may be useful.

Is it best use of AS money for individuals to each contact the helpline and take up valuable resource, although individual circumstances may indeed need specific guidance?

The fact there are already two threads running on this issue with the number of replies and concerns already shows a level of need, surely?

I will personally PM Katherine to see what can be done. A hastily put-together factsheet - even for a 'one-off' event many will not have to deal with again - might not go amiss?

Karen

 

[jenniferpa]

Katherine is away at the moment. However, if you want to wait...

I will reiterate though - this forum is not some kind of direct communication system for members to contact the society. It is a peer to peer support network. If people want specific issues to be dealt with in a timely manner by the society, then I would suggest contacting the society directly particularly when it is something as time-sensitive as this.

Incidentally, when I said "not specific to this forum" I meant that it was an issue that would be relevant to everyone with dementia, and people who support them, not just people who post on this forum. That's why I suggest contacting the help line - they are the "front line" when it comes to disseminating this kind of information, not the Talking Point Manager.

By approaching Katherine, you are actually putting an additional person in the loop, which doesn't seem terribly efficient, but it is of course your choice.

 

[Tender Face]

By approaching Katherine, you are actually putting an additional person in the loop, which doesn't seem terribly efficient, but it is of course your choice.

Well, some person needs to be put in some loop to alert them to a need that has been identified.

In Katherine’s absence, who can be contacted?

TP members are seeking support – and we are lucky to happen to have a member who happens to be working on the census – but this is not an issue for merely peer support, surely? More something that AS should be helping and directing on?

Thimblegirl48 posted on the other thread regarding the census queries:

(http://forum.alzheimers.org.uk/showthread.php?t=32078)

At least others have managed to get through to the helpline. I phoned this morning and after listening to the VERY patronising recorded voice taking me through some 5 menus I finally was told "there is no-one to answer your call right now, please call back during office hours (hours were quoted). I wanted to scream down the phone that it was during office hours and they had just wasted nearly 10 minutes of my time. My Mum lives at home, alone, but is totally incapable of completing the census. There doesn't seem to be any provision for these situations.

I am not picking a fight Jennifer – (although your direct sarcasm to me has been duly noted).

I am trying to help fellow carers ... could you please direct me to the person I need to highlight these concerns to for people who don’t have the time nor need the additional stress and just want some answers? If not, I will find out for myself – and that will only waste more time.

The response from AS should then be ‘Google-able’ for not only registered members on TP but others in the UK affected (of which there must be 1000s) seeking support on this issue and may be lurking and/or looking to AS for support?

Thank you.
Karen

 

[jenniferpa]

My intention was not to be sarcastic Karen, and I'm sorry if you thought I was being so, but to point out how best to get a response while indicating that you had a choice. The fastest, most efficient way is to contact the society, either via the helpline or as follows: http://www.alzheimers.org.uk/site/scripts/contact.php

I don't know how else to say it: this forum is not a conduit for communication directly with the AS and I and my fellow moderators don't have any special tricks/tips/contacts to get this issue handled any more quickly than via the links. If stating the reality of the situation is sarcasm, then so be it.

In fact, I think it's very important to people to make their voices known about this issue, both to the census people and the society.

 

[jenniferpa]

On this specific issue the problem is going to be that I wouldn't be at all surprised if the Society was as poorly placed as individuals to get a definitive answer because there is a very strong incentive to make it as difficult as possible for people to "opt out". I understand that that isn't what people actually want to do, but when something is mandated, as this is, the powers that be rarely advertise ways round the problem, because of the fear that that might encourage non-compliance.

One would hope that in the event of lost/destroyed/incorrectly filled out forms due to dementia that there would be some kind of amnesty after the fact, but I wonder if they would ever agree to that in advance.