• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Sufferers and carers

moleend1

Registered User
Mar 13, 2013
7
Thank you for your time, just a few questions.
1. On diagnosis,were you consulted on how you, as an individual would want to be treated as the disease progressed? Were your wishes, fears and individuality planned for?
2. Do you think a "dementia nurse" similar to a Macmillan nurse assigned to you in the community & accessed at your GP's would be helpful?
3. How often is your condition/care reviewed by your GP?
4. Do you feel isolated within your community due to a lack of awareness of Dementia?
5. What changes to practice would you suggest.

This is very helpful. Best wishes
 

Witzend

Registered User
Aug 29, 2007
4,291
SW London
I can only speak of our two cases, my mother (AD) and my father in law (probably VD)

In both cases an official diagnosis was only made after things had progressed to the stage where they were pretty much unable to retain any new information at all, and therefore to come to any reasoned decisions.

My mother had completely forgotten the diagnosis by the time she got home 10 minutes later (to be honest, probably as soon as she'd left the doctor's room) and never really accepted that there was anything wrong with her, even when she was so bad that she could no longer even make herself a cup of tea.

There was therefore no point in constantly reminding her or trying to discuss it, since it just caused distress.
The situation with my FIL was similar.

This is very often what happens IMO, though I can see that if there is a very early diagnosis then it would be possible and very useful and helpful to be able to discuss someone's wishes.
 

moleend1

Registered User
Mar 13, 2013
7
Thank you.
Do you have any other input for my other questions.
I'm a medical student trying to understand the level of support offered & whether the patient as an individual and family's needs were truly considered.
Regards
 

meme

Registered User
Aug 29, 2011
1,953
London
Thank you for your time, just a few questions.
1. On diagnosis,were you consulted on how you, as an individual would want to be treated as the disease progressed? Were your wishes, fears and individuality planned for?..........................nope...I railroad ma's wishes with and for her ..
2. Do you think a "dementia nurse" similar to a Macmillan nurse assigned to you in the community & accessed at your GP's would be helpful?............yes one person..if they are good at what they do and get on with you and yours!!! ..is always a great help..but no one seems to stay around long these days.....
3. How often is your condition/care reviewed by your GP?....yer 'avin a laff!!?? one good gp and the rest are lazy/inexperienced re real life fools...
4. Do you feel isolated within your community due to a lack of awareness of Dementia?....no, I like being isolated..and my mother is surrounded by people!!!
5. What changes to practice would you suggest......it is luck of the draw..you cant teach kindness and caring and common sense

This is very helpful. Best wishes
...........
 

tre

Registered User
Sep 23, 2008
1,353
Herts
1. On diagnosis,were you consulted on how you, as an individual would want to be treated as the disease progressed? Were your wishes, fears and individuality planned for?
My husband has PCA which is a rarer form of AD. No-one knew enough about it in the memory clinic to help much. They aI hear there are Admiral Nurses in some area but they need LA funding. It would be brilliant if they were as accessible as Macmillan nurses.
dvised getting POA. It was only when I found the support group myself that we got any helpful advice

2. Do you think a "dementia nurse" similar to a Macmillan nurse assigned to you in the community & accessed at your GP's would be helpful?

3. How often is your condition/care reviewed by your GP?
Never been reviewed by GP. Diagnosis January 2008. Until this year my husband had an annual review with the consultant and was seen in the intervening 12 months by the memory clinic, basically just to dole out the prescriptions. Annual review by consultant now seems to have disappeared ( cut backs? ) and we are now only to see the memory clinic who know nothing about the condition unless we hit a crisis in which case I have to ring, the consultant will call me back and if she cannot resolve it over the phone we will be given an outpatients appointment in a couple of weeks.

4. Do you feel isolated within your community due to a lack of awareness of Dementia?
a bit yes, especially as my husband,s dementia has left him blind and that he is younger than most of the others at the dementia cafes etc

5. What changes to practice would you suggest.
Prior to the cuts we had a Care Co-ordinator. This was one point of contact, could be a CPN, could be a social worker, who is someone we know well and we feel comfortable to talk to. We were told we would keep our Care Co-ordinator as long as we remained under the care of the trust. Then last September it was all stopped. I think it would be helpful with both GP and SW to see the same person every time but this is currently impossible. With regard to Social Workers the current system is they deal with you for a bit, then the case is closed and then next time you get whichever one has a space so for us with a rarer dementia you just get someone up to speed with the problems and then next time you start all over again. This is unsatisfactory.
Tre
 

moleend1

Registered User
Mar 13, 2013
7
Thank you so much for your time in answering my questions. I am a medical student in my first year and I am doing a Whole Patient Care assignment. I chose Dementia as my topic because I really do believe we are all going to be affected by it in someway, either ourselves or our loved ones. We seem to have all the care packages for cancer care but Dementia sadly falls behind....Yet 1 in 3 people over 65 will develop the disease.....the same as cancer. In my essay I am hoping to show the personal ramifications to the sufferer and families whilst ending with suggestions to improvements to care. I have heard stories of families losing their family homes in order to fund care for a loved one, the hospice movement doesn't seem to help & there is very little rest bite care. It has been a humbling experience learning more. I hope as a future Doctor to see the person behind the disease & their circumstances & families. If you could continue to post with your thoughts, I would be most grateful. x
 

chrisuz

Registered User
May 29, 2012
94
East Yorkshire
I am really glad you are asking these questions. You are right dementia is manifest in a unique way in every individual, there is no one size fits all. My husband has bvFTD. He has, with hindsight been ill at least 10 years, DX Nov 2012. It has to be seen that the home situation for a spouse is totally different than for other relationships. There is no escape for a wife as my home and my relationship has been invaded by FTD. That is to say it is any easier for any other relatives, problems caused by not living with the sufferer are just as bad, but I can only comment on my situation. I have found very few agencies have any knowledge of this illness or desire to learn, I am told he doesn't function like ALZ/dementia, of course not he has got FTD. I have been asked why he loses all the cutlery, turns the boiler off so we wake up frozen, goes to bed with a pair of scissors in his bed, do I think he feels he wants more control in the running of the home? No I don't , he has dementia and severe short term memory loss, there is no logical explanation to be found. I was told he doesn't seem happy, is that because he isn't happy living with me? NO He knows he can't talk properly, or always understand what is said to him, he doesn't like being incontinent, or constantly getting lost, he wants to be the man he once was, he wants to die because he hates the life he has. No daycare support will give him back what he has lost, he doesn't want to need support, he wants to do it himself, how insulting is it to suggest that if he isn't happy it must be because of me. I didn't give him FTD, and in his eyes wreck his life, and mine. We had our 2nd wedding anniversary last week, he was 60 last year, we weren't allowed to celebrate because he says he has nothing to celebrate. The illness has taken his ability to feel or express any emotion other than anger, in this words he has nothing. The only person who really hears us is the CPN, when he went to the GP to register his advance decision the GP felt it was too early as he still quite high functioning, as Chris said like a robot in a world devoid of meaning or full interaction with other people, because he can't properly communicate or make an emotional connection with anyone. It has been said that some people are born that way, but Chris's point is you probably don't miss what you never had, he is losing what he once had, things that other people take for granted, and the life that gives him he doesn't want. I think the only way forward for professionals is to really listen to what people like Chris say without telling him he is wrong, or coming up with a solution, but to understand the only acceptable solution for him is to be well, and if that isn't possible he will, as he has said, remain in God's waiting room. It is not what I or anyone else want to hear, but living with him I can see where he is coming from, and I am not sure if I was him I would feel differently. He is on antidepressants and mood stabilisers, but his reality is not one that anyone else would want, friends don't even visit, because 'they don't like to see him as he is' at least they have a choice. If students really want to learn, listen to people like my Chris then imagine themselves in his life, I really think they would know exactly what carers and sufferers need. I am sorry I have not have answered you questions as asked, but hopefully I have given you an overview.
 

moleend1

Registered User
Mar 13, 2013
7
Chrisuz, thank you for sharing your thoughts and story with me. It has really struck me for the need to try and better understand the situations sufferers and their carers are in. You are right in saying that healthcare professionals should sit down and talk to patients as people rather than looking at the case and trying to find a solution to make the patient feel better, as sometimes all that is needed is for them to feel like they are being listened too.
Best wishes.
 

danny

Registered User
Sep 9, 2009
3,342
cornwall/real name is Angela
Hi, just a quick comment and I hope you take this the right way. Quite often you use the term `sufferers` for people with dementia. I work with people with dementia and 99% are quite happy. It is their carers who are suffering, they are the ones who come in close to tears every day and need more support than what is currently on offer. The carers are the ones who watch their loved ones changing day by day, they are the ones who have to battle through the system to get the right support for their loved ones. The carers are the forgotten people, many themselves are older and have their own medical problems to contend with. Many carers also try and manage without seeking support early because they see it as their duty. Our hundreds of thousands of carers need much more help.
I wish you all the best with your career and you sound like you will be a Dr with compassion, don`t lose this.
 

SueShell

Registered User
Sep 13, 2012
395
Orpington
I had a devil of of a job getting Mum to the GP in the first place. Once she'd done the memory test the GP referred her to the Memory Clinic. It took another 2 months to get an appointment with them. What annoys me is although my Mum is the 'patient' because she cannot retain any information there is little point in the Doctor's talking to her, she makes things up that aren't true, and if they believed her she is absolutely fit as a fiddle! They seem to take no notice of the very people that do know - the carers.

Yes, having a dedicated nurse assigned would be very welcome.

Mum never heard from her GP at all (apart from when I went to him as I was suffering from depression).

Mum only sees me on a daily basis, no-one else - my life is very restricted too so I don't see as much of friends as I would like. We both feel forgotten and ignored!

At best I have been treated with ignorance, at worst with total diregard and contempt by various authority practitioners. It's bad enough having the daily grind of caring for someone with AD, without having to fight, fight, fight to get someone to take notice that you need help, for even the tiniest of things. It's demoralising and very wearing on top of the full-time caring role!
 

Norfolkgirl

Account Closed
Jul 18, 2012
514
I had a devil of of a job getting Mum to the GP in the first place. Once she'd done the memory test the GP referred her to the Memory Clinic. It took another 2 months to get an appointment with them. What annoys me is although my Mum is the 'patient' because she cannot retain any information there is little point in the Doctor's talking to her, she makes things up that aren't true, and if they believed her she is absolutely fit as a fiddle! They seem to take no notice of the very people that do know - the carers.

Yes, having a dedicated nurse assigned would be very welcome.

Mum never heard from her GP at all (apart from when I went to him as I was suffering from depression).

Mum only sees me on a daily basis, no-one else - my life is very restricted too so I don't see as much of friends as I would like. We both feel forgotten and ignored!

At best I have been treated with ignorance, at worst with total diregard and contempt by various authority practitioners. It's bad enough having the daily grind of caring for someone with AD, without having to fight, fight, fight to get someone to take notice that you need help, for even the tiniest of things. It's demoralising and very wearing on top of the full-time caring role!
Yes SueShell what you describe in your first paragraph in the last two sentences is exactly what my mother suffers - confabulation and of course, like you say, the professionals tend to believe the stories when in fact the carer can often prove otherwise, which the professionals miss.
 

Norfolkgirl

Account Closed
Jul 18, 2012
514
Thank you for your time, just a few questions.
1. On diagnosis,were you consulted on how you, as an individual would want to be treated as the disease progressed? Were your wishes, fears and individuality planned for?
2. Do you think a "dementia nurse" similar to a Macmillan nurse assigned to you in the community & accessed at your GP's would be helpful?
3. How often is your condition/care reviewed by your GP?
4. Do you feel isolated within your community due to a lack of awareness of Dementia?
5. What changes to practice would you suggest.

This is very helpful. Best wishes
I totally agree with every word that SueShell says. As well as seeing your loved one with dementia and trying to care for them as best you can, there also seems to be ignorance of the professionals when it comes to voicing fears of financial abuse of dementia sufferers which is still ongoing in my case 3 years on. As well as in my situation, there are also others who have posted in the Legal + Financial threads of TP their concerns in similar situations. A Dementia assigned nurse would be fantastic, especially one who would be clued up on confabulation as this has a huge impact on carers needing to be believed. More often than not, I have had to myself research policies and send to or show these to those very professionals who should already be clued up, for example the No Secrets paper, Safeguarding vulernable adults - a toolkit for GPs which was devised by the BMA. My GP's surgery knew nothing about these or how to implement them. The one thing that has really bugged me is that my mother's GP didn't think there was anything wrong with my mother, but of course he's not going to notice it if he never cared for her, never sees her regularly, never speaks to her regularly or often, how on earth can he make that assumption without weighing up everything else and cross-checking with what my mother says against the facts?
 

chrisuz

Registered User
May 29, 2012
94
East Yorkshire
Yes SueShell and NorfolkGirl, dementia is like a swirling mental mist and sometimes the patient is completely deluded and sometimes they are completely accurate. Why when sufferers descibe the home situation eg what they can and can't do are they completely believed, but when they descibe bad practice happening in a professional care situation do the powers that be immeadiately say , this person has dementia and is not a reliable witness. It seems to me that exagerated stories of the person's abilities and disbelief of complaints of bad care all lead to the same result, NO FURTHER ACTION NEEDED. Leave it to the family they will cope they have till now and will continue to, because caring for them is not a job it is an act of love.
 

moleend1

Registered User
Mar 13, 2013
7
Hi, just a quick comment and I hope you take this the right way. Quite often you use the term `sufferers` for people with dementia. I work with people with dementia and 99% are quite happy. It is their carers who are suffering, they are the ones who come in close to tears every day and need more support than what is currently on offer. The carers are the ones who watch their loved ones changing day by day, they are the ones who have to battle through the system to get the right support for their loved ones. The carers are the forgotten people, many themselves are older and have their own medical problems to contend with. Many carers also try and manage without seeking support early because they see it as their duty. Our hundreds of thousands of carers need much more help.
I wish you all the best with your career and you sound like you will be a Dr with compassion, don`t lose this.
Thank you, I hadn't thought about the way I have used the word 'sufferers' and I am sorry if it has caused any offence. You are completely right in saying that we shouldn't freely use the word 'sufferer' for dementia patients. I will try to think more carefully about what language I use when talking about people with dementia, something I will take forward in my future practice.
I am vey passionate about this subject and trying to not only improve the care given to people with dementia but also that the NHS should be providing more support for carers.
Best wishes.
 

moleend1

Registered User
Mar 13, 2013
7
Thank you so much for all your responses. I can feel your frustration and sense your exhaustion. There is a common theme, lack of support, information and care provided by GP's and health professionals. 1 in 3 of us will suffer from this disease.... that is similar statistics to cancer.....So why is it so underfunded? As we live longer this problem is only going to escalate! To be honest I am only a lowly 1st year medic but I have been shocked by how this conditiion effects those caring for their loved ones. We cannot leave families so isolated, the health of the carers is vital and as important. I hope to make reccomendations for a change to practice in my assignment but beyond that I now feel really passionate about this area and hope to try and raise awareness and my goal would be to speak at medical conferences on the need to improve practice in the future. I met with a family recently who very kindly allowed me to interview them and they said all the things that are being bought up on this forum. It was a very moving encounter and I feel humbled that people have agreed to share their stories with me. I can only promise if hopefully I qualify as a doctor, that I will do my very best to serve my patients and families to the very best of my ability.Thank you and I send you a big hug. Wish I could do more! xx
 

2jays

Registered User
Jun 4, 2010
11,598
West Midlands
You can do more

Whether you qualify as a doctor or not, and I so hope you do qualify,
In your medical life, you could raise awareness of carers needs
If not as a doctor, then as a medical point of view ambassador.